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I am in Northern NJ (Bergen County). I read what you said about having a lot of rage. I don't think I do, but I can tell you I do have less tolerance for petty stuff (ie.: I used to let people suck the life out of me and put up and shut up. Now, I have found ways to be bolder and get myself out of situations (as politely as possible). Not major stuff, just, the usual annoying neighbor that will talk till you're blue in the face. Normally, I would endure, now I will for a time, then excuse myself or the phone call I really am not in the mood for. I'll make an excuse to get off of sooner. I NEVER used to do that before. Now, I make myself matter. I would guess it would really help to keep letting it go and express what you feel. Sometimes that "lightbulb moment" shows up when you least expect it and it may become apparent why you feel enraged. If you have a good relationship w/your doc. maybe they've seen this reaction before, and can offer some good insight. I hope you can figure out what is causing you to feel this way. For me, half the battle is knowing the "what" and then you know how to proceed. Keep us posted and vent away!!!

Rage and Fear

Oh I get the rage. I'm covered with bruises from pummeling this stupid body with my fists. And I get the fear because I've lost the faith I subconciously had that my body was working with me. It can't be if it's going to betray me this way. I didn't consent to rashes on my face or swollen joints or dizzy spells or weird shooting pains. Who knows what it's going to do next? My body is obviously not on track with the general program of a healthy middle-age and happy gardening retirement. And it's not like there's some foreign invader to blame. It's my own stupid body doing this to itself. That just ticks me off.

I know that it could be much worse and I know that I'll eventually get to a place where I barely think about it anymore because avoiding the sun and taking pills will have become normal to me. But it's not right now, and while I know that millions of people have more difficult things to deal with, this is mine and I believe I have the right to kick and scream and be entirely childish about it for a while. I'll find peace with it later, right now I'm indulging in an internal bit of thermonuclear war.

THANK YOU!!! This is ALL that I'm saying!! And I am SO TIRED of people telling me I need to "get over it" or "move on with my life"... If I FREAKING knew how to do THAT, do you THINK I'd be freaking out the way I am????? NOOOOOOOOOOOOOOOOOOO!!!!! Why not try to HELP me figure this out, not just sit there and tell me what I NEED to do, without any explaination of HOW?

And that makes me even ANGRIER...

And then, the fear, started out just being fear of the unknown... But, now all of a sudden, I have this overwhelming fear of death that I never had before... EVER. And the thing is, I KNOW that I can live a long time with this, and more than likely will... But, in my head, my time is short, and I haven't accomplished HALF of what I want... It doesn't make sense because I KNOW better... But, each day that passes, something else happens and scares me even more... Then of course, there's just the fear of not knowing if I can DO this for the rest of my life...

All I want is someone to tell me it's going to be okay... And no one will, because they don't REALLY know... And at the same time, if they did, I think I'd probably think "How do YOU know?" That is how bad my attitude is right now... About EVERYTHING!

And I feel defective because I'm not handling this better... I mean, there are people going through WAY worse things than I am... What right do I have to complain?

"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono

SoleSinger, you said it all so perfectly. I think you and Katalanta described my feelings about having lupus perfectly. It's a totally different world and all the rules have changed. In fact I don't even know what the rules are or when they will change. At least we are all in this together and we have each other here to talk about the anger and the fear that goes along with having lupus.

My own experience - I went to three different local meetings of the Lupus Foundation and came away unsatisfied. It was a matter of a group of people sitting and listening to a speaker. Everyone there had different symptoms and manifestations of the disease, and there was no time in the program to actually sit as a group and talk to each other. I've found far more help on Internet message boards such as this one, if only for the fact that you can target your particular problem/question with a topic heading and get answers/opinions from folks with similar experiences.

Do you know the Lupus Foundation of America doesn't even have a chapter here? My best friend, when he started pushing this support gorup idea was looking on their site and couldn't find one... Then he looked at the Lupus Foundation of Colorado, and you'd THINK that they'd have more meetings in like the metro area, right? Not really... when he looked they were all in places it was going to take me at least an hour to get to, and they were at these ridiculous times, so I couldn't get there anyway... NOT THAT I WAS GOING, mind you... I'm still not sure I'd go for that... even if we WERE sitting in a group as opposed to listening to speakers...

Anyway, thanks for replying!

"All sounds are potentially dangerous.
All sounds are potentially medicinal.
All sounds are beautiful." ~Yoko Ono